Parkinson’s Disease patient Elizabeth Larsen gives a deeply honest view of her Deep Brain Simulation (DBS) surgery to control her tremors. We learn what it feels like to have electrodes in the brain and what happens when patients want to change their tremor management software program.
Dr. Stieg: I’d like to welcome back our guests, Dr. Michael Kaplitt, Vice Chair of Research and Professor of Neurosurgery at Weill Cornell Medicine, NewYork-Presbyterian Hospital, and his patient, Elizabeth Larsen. In our previous episode, Dr. Kaplitt gave us a very clear understanding of what people need to know about Parkinson’s. His patient, Elizabeth shared how Parkinson’s increasingly impacted her quality of life over eight years. When her symptoms became more severe, she decided to overcome her fears and have deep brain stimulation performed by Dr. Kaplitt. Today we’ll learn why that decision was life changing. Describe the process that Elizabeth went through to get the deep brain stimulation.
Dr. Kaplitt: So when patients come to our attention, the first thing that I want to do is make sure that I agree that they actually have routine Parkinson’s. They don’t have some more complex disorder that might make their ability to respond to surgery and to undergo it safely. So once I confirm that, and that’s usually just based on a clinical exam in my agreement with the neurologist, then we discuss what we believe surgery might or might not do for that individual patient. It is critically important that I really understand my patients well. So we spend a lot of time together discussing many of the questions you’ve asked this morning about how it’s affecting your life, et cetera. It’s not just to establish a social connection, which is nice. I need to understand more about her life so I know how my treatment can impact her life. Otherwise there’s no point in having done it.
Dr. Kaplitt: If I can on some rating scale that I can publish a paper on show that someone’s better but it doesn’t do anything for their life, then all I’ve done is an academic exercise. So we spend a lot of time doing that. And, and the things that I mentioned earlier, we look at how the complications of medicines are affecting them and whether we can make that better. We look at how the disability from, not responding as well to medicines can make them and whether we can make them better and the things we can usually help or we can help increase the number of hours per day they spend in their good or on state, we can help reduce these fluctuations. The randomness of the responses, like what you heard earlier when she suddenly can’t move unexpectedly, same time the day before she was fine. We can smooth that out, so that doesn’t happen as much and it’s more consistent. And often we can reduce the amount of medicines patients are taking while we achieve these benefits precisely because we’re bypassing the need for those medicines. So we look at all of that.
Dr. Stieg: So it’s a combination of putting these electrodes in and trying to wean them off the medications that she didn’t seem to like.
Dr. Kaplitt: And that’s a process. It’s very important for the patient and the neurologist to understand that surgery is only the beginning of the treatment, not the end. That this is a process that takes time. Unlike a lot of other areas of neurosurgery where the process pretty much ends when you come for your postoperative visit. This takes weeks and months to optimize the programming of these stimulators to the individual and to slowly wean them off medicines. Patients do very well when you gradually adjust them. When you do things suddenly, the brain hates that and they don’t do nearly as well.
Dr. Stieg: Elizabeth, can you describe what it was like coming into the operating room, having electrodes put in and in battery packs implanted in and underneath your skin?
Elizabeth Larsen: Getting prepped for the surgery, that first surgery where he asked to put those electrodes in, I felt like Darth Vader once he put that frame on my head. Everybody tried to help and make me feel better and I did and I held my own, but my stepson was sitting with me and I’m like, I really feel like I belong in Star Wars at the moment because it’s just—
Dr. Stieg: It’s not natural.
Elizabeth Larsen: No, I have to say the surgery without the anesthesia, with just the local, when he’s putting those electrodes in, my brain is actually—
Dr. Stieg: So it’s important for people to know you’re awake for the surgery.
Elizabeth Larsen: Yes you’re awake cause you have to do exercises with the neurologist in the operating room. I thought that was pretty cool except for the part where you shot it up to so that you could figure out the max. Oh my God, that part is, it’s not the worst, but my lip started twitching. My eyes started twitching. I was like done. It wasn’t so bad without the anesthesia and it wasn’t— it was bad hearing the sounds like the sound of that drill, that drill is God awful. The drill and even worse than the drill is a staple gun. Alright, let’s staple it closed.
Dr. Stieg: But all manageable.
Elizabeth Larsen: For me, they were manageable. I asked him a couple of questions. He goes, “Now is not really the time.”
Dr. Stieg: You get the electrodes in and the batteries are implanted. What’s the timeframe between getting them in and then finding the appropriate setting for the patient?
Dr. Kaplitt: So in our center, we usually wait about two weeks after the batteries are put in to start trying to turn it on because we found early in my practice that when we tried to turn patients on too early, they just had very unpredictable responses because the brain was still healing from the trauma of having put these things in the middle of the brain. You know, putting electrodes in as minimally invasive as this is, it’s still traumatizing the part of the brain you’re going through and it’s got to heal. Once it heals, they respond much more reliably. So we wait about two weeks after the initial surgery. And then we usually have patients come back roughly every two weeks thereafter. And in our experience, it takes anywhere from three visits to seven or eight visits. So if you do the math, if that’s a roughly every two weeks, anywhere from six weeks to three or four months to optimize this.
Dr. Stieg: Like the medicine, is there a half-life? How long does this treatment last?
Dr. Kaplitt: Well, it’s a great question. So what I tell patients is that to the best of our knowledge for most patients, the benefits are indefinite as long as their disease goes on. But that doesn’t mean they will be the same indefinitely. Because remember it is still a progressive disease. So patients may get worse, but they will still be better with this than without this. And the reason we know that is because we can turn it off. So I have had patients that have said, I don’t think I want my batteries replaced cause I don’t think it’s doing much for me anymore. Four or five years out, let’s say. Okay. And then all of a sudden, a few months later we get an emergency phone call. Oh my God, my battery died. I can’t move. My tremors are terrible. You got to replace them tomorrow because they didn’t realize that they would be that much worse. We try to avoid that, but that’s why we say we think it works indefinitely, but it may not keep you the same indefinitely.
Dr. Larsen: And my understanding was that max that you found in that first surgery, that’s like the range that I have to go.
Dr. Kaplitt: Correct, but, but that was so much higher than anything we would ever need to use that. That’s usually, if you get the electrodes in the right place, that’s usually not limiting to people.
Elizabeth Larsen: Yes. That’s what I thought.
Dr. Stieg: Was life transformed after you got the battery?
Elizabeth Larsen: It was awesome!
Dr. Stieg: How so?
Elizabeth Larsen: Was just so wild because I’m sitting there and I’m shaking and I’m shaking. All of a sudden, my whole body is calming down and my hands aren’t shaking and I, my lip used to shake all the time. My lip wasn’t shaking. Everything just settled. Then we went for a walk. It was just amazing. So she did one program the first time I went. I also asked her if I could have some of the ranges so I could bring it home. I got the, okay. She made me show her in the office that I knew everything because she went, all right, show me what he told you, and I did everything and you know, the right side for the left side and left side for the right side. But I had a limit as to how much I could do.
Dr. Kaplitt: It’s actually been a big technological advance in recent years compared to when I started my practice is that the newer batteries and pulse generators give us a lot more options to let the patient have more control over some of their programs. Obviously we don’t give them total freedom because they could hurt themselves if they overstimulate but we can set lockouts and prevent it, but now we can let them go home and try different things in a way that can accelerate the optimization that we couldn’t do before.
Elizabeth Larsen: Yeah. Second time I went, she took the first program and I’m sitting there like in the chair like I am now and all of a sudden I start shaking and I look at her. She goes, I turned you off. She goes, I had to out the program and I wanted to swap something else, and I’m like, all right, all right, so then she put it back on. Then we went out for a walk and I looked at her and I went, I don’t like this one. She goes, why? I go, I don’t know. I just don’t feel right. So we listened. We went delete, delete. Now we’re talking about me and my brain and my head, and we’re like, yes, please delete. So she deleted. Then she found another one, which is the one I’m still using now with, you know, just the upping the range. And from that, I mean from the minute that first programming even happened, I started having all major benefits. Like even typing in my phone. I could type fast, I could type normal again. I could tie my shoes again. The stupidest things, folding laundry. I hated doing laundry because it was taking me two hours to fold. Now I’m back to 20 minutes and now I try to speed through it to see how fast.
Dr. Stieg: What do you tell family members and patients how to manage the problems going forward if they don’t have this kind of response?
Dr. Kaplitt: No, it’s a great question. I mean the fact is that this is not a cure for the disease. It is a better treatment for symptoms for patients who are the right patients for this approach, but obviously the real hope is in the cutting edge therapies, these new sort of more biologically targeted therapies that everybody’s working on that will hopefully take all the benefits that we can do now with things like brain stimulation and even get beyond that as time goes on.
Dr. Stieg: Basically what you’re saying then is a patient like Elizabeth is always going to remain in the sphere of a neurologist or a neurosurgeon like you and you and your team are there to help them manage the problems if they arise and when they arise.
Dr. Kaplitt: Correct. And I think it’s important for patients to understand that and for caregivers,
Elizabeth Larsen: And you told me right up front my walking and my balance may not, it’ll be better because of the other stuff being addressed, but it wasn’t necessarily going to be fixed.
Dr. Stieg: Tell me what that feels like. As I’m sitting here listening to you watching you, I’m just imagining an electrode being in my brain, somebody tweaking a battery on my chest wall and all of a sudden I feel like a different person. What’s going on emotionally?
Elizabeth Larsen: Feels awesome. It feels…
Dr. Stieg: So it feels good?
Elizabeth Larsen: Yes, because yes, because before the surgery I would sit there and I’d be fidgeting and I’d be moving and my toe would be cramping and my whole body had shaking and my lip would be shaking. And now it’s like I can do everything normal again. But when I sit in that office and then sometimes I’ll look her and she’ll be like, I’m changing something, just wait. You know? Or you know, or my, I’ll be like, my foot’s cramping, can we do something about it? So you have to be honest about what’s going on when you go in for the program. Otherwise it’s not going to work.
Dr. Stieg: Not everybody’s lucky like Elizabeth, either you’re not a candidate for DBS or you put them in and they don’t work or like we talked about, they could fail over time. What’s the next option?
Dr. Kaplitt: The truth is, is that if you’re very careful in how you select patients, I think the issue is, as you said earlier, for those patients that you feel are not candidates for one reason or another, the question is why. So if there is a concern, for example, about the device or about the invasive surgery, there is a new therapy that we’re, we’ve been pioneering and a study that we’re finishing right now. To use a noninvasive approach to target these same structures in the brain, but using ultrasound that goes through the skull and targets the area of the brain that we’re interested in. That does not involve any implants in the body, but it is also not adjustable. It is a permanent change to the brain. The ultrasound literally destroys an area of the brain that’s not functioning properly to free up the rest of the brain to function more properly.
Dr. Kaplitt: It’s like throwing a car that’s in neutral into drive. As long as it’s a neutral can’t work but you throw it into drive and now it can work so by destroying an abnormal area of the brain you can take the brain out of neutral and free up the rest of the brain to function. So this is a noninvasive procedure. And for those patients where putting devices in their body could be a problem, let’s say they have diabetes or they have other concerns about infection. Many Parkinson’s patients are exceedingly thin and having devices in their body can be an issue or if we’re concerned about blood thinners or other things that a lot of older patients are on, then this is something that is right now experimental for Parkinson’s. It is actually FDA approved for the past several years for that other disease we talked about essential tremor and that is something we are doing a lot of.
Dr. Kaplitt: But for Parkinson’s right now it’s experimental, but we are nearing the end of the study and if that looks good, that will be a potential option for patients. And then like I said, there are newer therapies being looked at for. We’ve pioneered gene therapies that changed the way cells function. Others are looking at cell based therapies and these are designed to actually sort of restore the function of the brain, not just destroy these areas. And I think that as those evolve, they may show promise, particularly for some of the things that DBS might not help as much with. But that’s still in the evolving phase.
Dr. Stieg: But yeah, that’s one thing I wanted to clarify. I mean I think we all remember Ronnie Reagan Jr’s speech about STEM cells, you know, promising cures. What, 20 years ago. What, what do you think the timeframe is going to be for these new new forms of therapy?
Dr. Kaplitt: I’ve always been very hesitant to use the term cure for anything because we don’t cure a lot in medicine, let’s face it, we cure broken bones, we cure infections, we don’t cure a lot else. When somebody gets a stent in their heart or bypass, we’re not curing their heart disease, which is treating it right. There’s still the disease process is still there, so I think it’s an unfair standard. I know everybody wants a cure for Parkinson’s. That’s rational to want that, but I think it’s an unfair standard to hold new therapies to. I think that we can do a lot more for patients in our lifetimes with these new therapies that are being evolved even if we don’t absolutely cure the disease. I think the number of advanced clinical trials that are going on right now in gene therapy in particular leads me to believe that within the next five years, in all likelihood we will probably see our first gene therapy and maybe more than one approved for more general use.
Dr. Kaplitt: I think cell therapies will be a little bit behind that because it’s taken time. Cell therapies are a little more complicated. They have…
Dr. Stieg: And by cell therapies you’re talking about STEM cells?
Dr. Kaplitt: STEM cells for example. The problem is that cell therapies have enormous promise because they can actually replace cells that are lost and very almost nothing else can do that. So it’s got a great romantic concept behind it to fix the damaged brain in many diseases. The tough part that has been very challenging is not to create the cells that you need to create. That scientists have been very good at creating dopamine producing cells. It’s getting them to incorporate into the brain. You know those dopamine cells that control the movement circuit that I told you about earlier. Those are developing and incorporating into our brain when we are in our mother’s womb, right as we’re growing. It is a real challenge to take that 50 60 70 year old brain that’s been hardwired for decades and that is now diseased and say let’s put some cells in and get them to reestablish those very same connections by a completely different process. That has been the big challenge because if they don’t establish the right connections, they can actually create more harm than good. So I think the promise is there and there are a lot of human experimentation that is now beginning, but it’s very hard to put a timetable because of these challenges.
Dr. Stieg: You would agree though that the Michael J. Fox foundation, other foundations, the NIH have been exceedingly supportive of these new innovative therapies?
Dr. Kaplitt: Absolutely. All of these patient groups, Michael J. Fox, the American Parkinson’s disease association, the Parkinson’s Disease Foundation, there are many of them out there. Fox’s obviously the largest one and then the government have been very supportive. Interestingly, the Defense Department has been very supportive of Parkinson’s research over years for a variety of reasons, so that’s why we’ve made a lot of the advances we have in why we’re on the cusp of some of these new therapies actually reaching general use potentially. But one of the interesting things, for example, Fox Foundation I think has realized, as have many of these other foundations, is that while the research is very exciting and obviously as both a surgeon and a scientist, I want people to be interested in the science, but they realize that they can do a lot for patients right now by providing information for them, by providing advocacy. And that’s been tremendous.
Dr. Stieg: Elizabeth, what message do you want to deliver to people that are just early diagnosed with Parkinson’s or considering advanced therapies?
Elizabeth Larsen: If you’re just being diagnosed with Parkinson’s? The first thing I would tell anyone is to at least get to a neurologist and in the meantime exercise and keep moving until you figure out what long-term therapy you want and then if you are a candidate for DBS surgery, it’s all about the quality of life. The reason I came to Dr. Kaplitt is because my neurologist was relentless at suggesting it constantly. I should have been there two years sooner, but I was too scared to go and find out about it.
Dr. Stieg: And you’re living testimony about how safe this surgery is.
Elizabeth Larsen: Absolutely.
Dr. Stieg: Mike, I know that Elizabeth is heavily into boxing, but I understand there’s also dance therapy?
Dr. Kaplitt: The idea behind boxing and behind dance therapy and these others are all very analogous, very similar, which is moving helps movement. There’s no question. And so any type of regular movement can help, but things like boxing, dancing, combine movement with coordination and so there are many different ways that the brain can help stabilize our body, can know where it is in space. The circuits that we’re influencing are just one of them. You also, your eyes see where you are, your feet feel where you are and those influence different circuits. And so the value of all of these is that it can help the brain to use all this other information that it’s getting every second to try to help jumpstart circuits that can improve some of these things like balance, as you mentioned earlier, that is not necessarily helped as much by brain stimulation. So that’s why I, I’m a big believer in all of this.
Dr. Stieg: Dr. Michael Kaplitt and Elizabeth Larsen, I want to thank you from the bottom of my heart for giving such a thorough description of what Parkinson’s Disease is, hope to people that have it. And I think the message is this is about quality of life and there’s no reason for somebody to suffer the way they suffer with Parkinson’s Disease given how common it appears to be in America. Thank you so much for being here.